I'm Karthikeyan from SouthIndia, am suffering from AMN, i lost my walking stability, Kindly guide me on the same Thank you

[karthikeyanbalu]

[COwithAMN Administrator AMN EASIER Volunteer]

Dear Karthikeyan

Thank you for getting in touch and for finding us on AMN Easier. I am the originator of the site and have had AMN for 30+ years. But everyone on AMN Easier has different levels of experience in dealing with this disorder, so the benefit of us meeting here on-line is that you can almost certainly find someone whose experience is similar to your own.

To help you best, it would be good if you can summarise as much about your situation as you feel comfortable in sharing. Put this is your profile, not in a posting or question, because your profile is not accessible publicly and is only seen by bona-fide people who are members of AMN Easier.

You can see my profile by clicking on COwithAMN beside my photo on any post from me.

You mention that you have lost your walking stability. That's the first and most common thing that happens with AMN. Depending on how serious this is you may need to use a walking stick or walking frame of some kind. Most of use one of more of these methods. If things get more difficult, as they have with me and others, you may need to get a wheelchair or a motorised scooter.

Many of us find at the start that the psychological challenge of having to use walking aids is just as much of an issue to confront and deal with as the physical challenge. It's important to try to maintain a positive attitude. We are all members of this club - AMN - which we never asked to join. But we are here and mostly we learn how to deal with things and get on with our lives, even though we all have bad and good days. That's the great benefit of AMN Easier (I hope) - sharing thoughts and advice and supporting each other through difficult times.

So please let us know a little more about yourself and I know we can help you. I think you are the first person from India to have joined, so welcome.

Chris

[karthikeyanbalu in reply to COwithAMN]

So kind of you Mr.Chris, Am all alone suffering from ALD/AMN, 6 Years ago - I lost my walking stability, I dont know what to do? where to go? What to follow? Anyways you gave me more comfort and confidence to live peacefully, am so grateful to you. Thank you for your brief message.

My age is 31, I recently got married, Am the only son in my family, Would you please guide me about the Child birth, The gene would get transferred to my child?

My symptoms are: Walking Instability, I could walk only 100 steps if i Catch anyone hand.

The next major symptom is Urinary Incontinence. and atlast am suffering from Adrenal Insufficiency (Addisons disease) for the past 10 years - I'm Intaking Prednisolone and Fludrocortisne for this Addisons disease.

May i know you How long I could walk with any support?

Please guide me on the same, We all together - This word highly give confidence for me.

[jack3953 in reply to karthikeyanbalu]

hello, i saw your post and am writing to say hello even if i can't give specific help. i can imagine that you feel in some respects alone as this disease/illness is very rare. even in uk it is hard finding a doctor that understands amn/ald even if they have looked it up in wikipedia and are an instant exprert.

i think you are young to have this illness. you can look at my profile to see how it affects a 60-year old.

it started as cold feet [8 years ago], and progressed to loss of balance when walking and then numbness in feet and legs. this affects everyone at different speeds so you can't use me as a guide.

that's enough from me. best wishes, jack [do you have a shortened first name?]

[karthikeyanbalu in reply to jack3953]

Dear Jack,

My age is 31_Male, Am suffering from loss of balance when walking and then numbness in feet and legs for the last 6 years.

Would you please guide me about the disease progression after this walking disability.

Thank you

Regards,

Karthikeyan

[COwithAMN Administrator AMN EASIER Volunteer in reply to karthikeyanbalu]

Dear Karthikeyan

Thank you for writing again. AMN is difficult to deal with especially because it's a rare disease so it is usually difficult to find other people you can talk to.

AMN is progressive which means your walking will get worse. For most of us this occurs very slowly from year to year. However, you are only 31 so you are more likely to be able to benefit from medical advances as they come along. So don't lose heart!

You asked about what happens if you have a child. The way the genetic inheritance works for AMN is that if your wife has a daughter then the daughter will be a carrier of the AMN gene. If your wife has a son then the son will be healthy and will not have AMN and will not be a carrier. Only females can be carriers. I hope this is clear.

If you have sisters then they should be tested to see if they are carriers. There is a 50% chance that they are.

Urinary incontinence is also something we all tend to suffer from. You may have to use catheters if it's too bad. Otherwise - like me - you may simply need to be careful. Either way it's important to watch out for urinary infections which need to be treated with antibiotics.

With very best wishes

Chris

[karthikeyanbalu in reply to COwithAMN]

Dear Chris,

Thanks a lot for your kind reply.

Am the only son, no sisters/brothers

For the past 6 years i lost my walking stability, May i know, How long i could walk with an assistance/stick.

Am very clear about your explanation for the children.

Regards,

Karthikeyan

[COwithAMN Administrator AMN EASIER Volunteer in reply to karthikeyanbalu]

Dear Karthikeyan

The progression in the way walking becomes impaired is usually very slow. There is therefore a good chance you will be able to walk well with a stick for many years. But no-one can say for sure. I have had AMN for 30 years (just turned 70) and it's only in the last 7 or 8 years that my walking has got to the point where I need a scooter or wheelchair to go any distance. So my best advice is to keep positive, keep moving and get on with your life.

I find that stretching is actually more important than rigorous exercise, although that is also very helpful in keeping you as fit as possible. In your culture I imagine yoga is used a lot - is that so? Anything that helps spastic and stiff leg muscles to stretch is very good. I do a lot of these every day in early morning.

With best wishes

Chris